HealingWell
Search Close Search
☰

Burning Pain aka myalgia

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/8/2009 6:46 PM (GMT 0)
Does anyone suffer from this? I am on my way to a lupus diagnosis and im thinking its muscle inflammation. It goes from my knees into my back. Last night it burned and ached and i felt pressure i guess from swelling. I got sharp pains too and its horrible. My feet went totally numb and tingly. I couldn't really move. Anyone else get this?? What can be done? Its horrible and brought me to tears and is only getting worse :/ -Britt
Posted 4/8/2009 11:42 PM (GMT 0)
Hey Mommy, We have a Fibromyalgia forum here. You could get lots of info there. Some of the Lupus members also have fibro, its loves to accompany autoimmune disorders. I understand it can be very painful. Sorry you are dealing with this too. Blessings!
Posted 4/12/2009 3:01 PM (GMT 0)
It's not really focused on but Lupus can cause muscle pain and such as well. I notice that my shoulders burn a lot, but that's about my only area I notice burning, all my other joints and muscles just ache. I'm sorry your going through this ]:

If you haven't been diagnosed with lupus and you suspect it, I suggest going for blood work while your in a flare or with the butterfly rash if you get that. My tests always came back negative until I went in with the butterfly rash and the test came back positive. Lupus is sneaky.

I really hope you feel better and get some relief from this pain, hopefully your doctor will start you on some medication quickly. Until then please take it easy ]: 

Feel better soon.

 

Posted 4/13/2009 6:19 PM (GMT 0)
Thanks for the support Lady. Unfortunately I haven't gotten anything for pain yet. No dr will treat me until they know whats wrong. I have gotten some blood work done. I had a positive ana twice. Once 1/160 speckled and within a week later another that came back high at 243. I am waiting on the more specific blood results though antism, antidna, SSA, SSB, antirnp and scl70. I got that done two fridays ago so I should be hearing something soon. This flare is jumping around on me now. I thought it was going away and I felt alright yesterday. Then last night I got the rash again(I only get a photosensitive rash but its in a butterfly pattern)and felt crappy. Today I have the rash again but dont feel too bad. Its so unpredictable! Thanks again though and hope you are feeling well! -Britt
Posted 4/14/2009 12:07 PM (GMT 0)
Hey Brittanee,
Where do you live? I can't believe it is taking you this long to get some diagnosis or even someone to treat you for the symptoms at least. My brother went through years of not getting a diagnosis and he finally said that the doctors he had did just that - treat the symptoms. Autoimmune diseases are really hard to diagnose from what I have been reading, but it still doesn't mean that you should have to wait for relief. The prednisone they put me on last week was a godsend!! I'm still a little stiff, but I'm starting to feel like a human being again. Last week just about did me in, and I feel so bad that you are still suffering so. When you go to the doctor do you go by yourself, because I sometimes think they think us women tend to exaggerate our symptoms, but the last time I took my husband (because he knew how bad it was). I think they finally took me serious and that it was affecting the whole family. I know that seems ridiculous but I have heard of it happening with others. Hope you get some treatment real soon! Keep us posted.

Hugs and Angels,
Lynnette
Posted 4/14/2009 12:52 PM (GMT 0)
Hey there. Yeah its been a rough road. I have had symptoms since 15 which started with seizures that only happened twice and went away. I still have an abnormal brain wave pattern though. Anyway I guess I felt bad on and off for years but paid it no mind. Then back in sept I started feeling crappy and its been flares on and off since. I have thought about that too. If my bf can't get off work to take me I will take his sister because she will be out of school by then and she is a great supporter of mine and knows how I feel etc. I thank you for your support as well and Im hoping to get answers soon! Take care and one more question, Do your symptoms go away between flares or do some lessen or how does it work for you? Some of mine go away others aren't as bad etc. Ttys. Have a good day. -Britt
Posted 4/14/2009 5:56 PM (GMT 0)
Hey Britt,
Any support you can get to help your doctors understand that you are in need of immediate care will help. As far as my flares go, I just now got diagnosed this in March, but a year ago from October I had my first flare - not knowing what it was at the time and as soon as I received treatment for a shoulder impingement (cortizone shot) all my other symptoms disappeared until this September when I started to first develop Carpal Tunnel. That went on for about 4 months with my rheumy just giving me anti-inflammatories, neurontin and darvocet. Eventually I developed trigger finger in both hands and went to see an orthopaedist who injected me again with cortizone. Everything seemed to be going good from December to the end of February and then WHAM!!! it hit me between the eyes. I can tell you though I was under extreme stress at the time the flare came and I am starting to understand that this is what happened with the first flare over a year ago. I'm in the process of eliminating commitments in my life that for the most part brought me joy, but also physical and emotional stress. I am a DOER as some people say. I overcommitt and don't delegate and take care of everybody else. My family has always told me to slow down and I wouldn't so I guess this is god's way of letting me know that I have to take care of me now. It will be hard at first to admit that I am not superwoman and supermom anymore and many times this depresses me. However, I take it one day at a time and refuse to give into it. Be your own health advocate and when you go in to your doctor be very direct and maybe somewhat demanding about your health care. My god, even if they won't give you a DX they should at least be able to give you something for the pain and the inflammation! Have you come right out and asked them to prescribe a painkiller or muscle relaxer so you can at least sleep so you can start to heal? Let me know how it goes. I feel so bad that you cannot get the relief that you need. Again, where do you live? Is it a small town or community that there are not the quality of doctors who understand this disease. They should still be able to refer you. Keep us posted and hang in there.
Lynnette
Posted 4/14/2009 8:54 PM (GMT 0)
Hey girl. I too am like supermom lol Or try to be at least. I started school in january and I am having to take the summer off as I said because I realized my body and God are telling me something too. Its not going to get any better. Every flare seems to get worse. I have had a rash all day long because of the fluorescent lighting here at school. I have asked for pain pills before and even said I can take 4 ibuprofen and feel it! I have taken more than that and felt it so yes I have mentioned it and the first dr completely ignored me and said take 1 ibuprofen for your weight with pain. I was thinking you dumb ***** I just told you I can take 4 with no relief sometimes! So I moved on got another dr. He is the one who agreed that I have possible lupus after doing a test for another disease. He has seen my rash. He referred me to a rheumy close by who I saw 6 months previously. He had said I was crazy but then I didn't have the positive anas. I just went and saw him with them and had a rash and he said "I am going to do some specific tests on you to see if you have lupus or any other autoimmune disease but I really dont think you do. Sometimes people with heart murmurs and being double jointed can cause some weird symptoms." I was like omg I want to choke you!! Lol Anyhow, I took it upon myself after meeting a friend who is almost identical with symptoms and got diagnosed in Baltimore after being denied here as well(omg!) lol to call up there and get an appt. I have to call friday at the latest to have one scheduled. I will call my pcp and see about something for pain if the appointment is a while away. But yes the drs here know hardly anything about lupus which is why i saw a dr twice and Julie saw 3 doctors here who all said nothing was wrong! I will keep you posted though and hope you get feeling better. Take care and I will talk to you soon. And thanks for the support! -Brittanee
Posted 4/16/2009 12:18 PM (GMT 0)
Hey Brittanee,
Sorry it has taken me so long to reply. I've actually been feeling quite better in the last few days so I've been trying to get caught up on a few things that I've let go. The prednisone they gave me has really done the job, although everyone warns me of the side effects of bloating and all, but as long as I can function somewhat I'm willing to take the risks. Hang in there and keep fighting for an answer. Sounds like you should get some answers soon. Keep us posted.

Hugs and angels,
Lynnette
Posted 4/16/2009 12:59 PM (GMT 0)
Hey there. Im so glad to hear you are feeling better :) I have been praying for all my lupie friends in hopes it will help them. Unfortunately now I am having relationship problems. I have been with my bf for over a year now and in this flare for a month or so. It is hard going in and out of depression and not every day is like the day before. My symptoms kind of do what they want to do. I never know how I will feel. So I am trying the best I can but am staying somewhere else for a while with my son until he realizes some things. My friend Julie with lupus tried to tell him last night that this is def now what a lupie needs right now. Its way too much to deal with. Well I hope to talk to you soon and im gonna call about my drs appt today! Hopefully Ill see that bloodwork come back too I had a dream my antiDNA came back positive the other night so well see. I had that dream about my ana and it was a while after that it came back positive twice. Well hang in there and dont worry too much about side effects as long as you are feeling better :) Ttys! -Britt

Posted 4/17/2009 12:01 PM (GMT 0)
Hey Brittanee,
Sorry to hear about your relationship problems. You know from what I understand it is mostly women that develop autoimmune diseases and I would just love to see how many of the men out there could go through the pain that we have and still be able to cope with everyday life. Hope everything works out well. Just take care of you so you can be there for the rest of your family. You are first and foremost and the rest will fall into place. Keep us posted.

Hugs and Angels,
Lynnette
Posted 4/17/2009 7:30 PM (GMT 0)
Lynnette,

Well things are better relationship wise. Dont feel too bad today except I slept 10-12 hours and still feel tired and my legs burn. Last night my knees ached and it was a little puffy underneath. I checked this morning and it was gone and so was the pain. I woke up really sore and stiff though and my fingers were even a little puffy and it looked like light purple on each of my knuckles on both hands. I also got my blood results back and they are supposedly normal. The letter from the dr also said he thinks its my heart murmur and being double jointed that is causing my problems and i should be open minded. He said he doesn't think I have lupus or autoimmune and the anas can occur in healthy people. Also, theres no treatment for what he thinks is going on. So he is having me get blood done every 3 months for certain tests. I also have my appt set up for the hospital and rheumatology center a few hours away for may 21st. I really feel like what that dr said is irrelevant and I will get answers at this next appt. Its sad they wont even give me pain meds and ok if it is what he says it is how come it doesn't explain the rash or the mouth ulcers or the two positive anas which just happened to show up around the same time the rash did?? Drs drive me up the wall sometimes! I mean it doesn't even explain the brain fog and stuff ugh. Well sorry for kinda venting. My bf and I are getting along better and he's gonna try to get off work to go with me to my next appt. I have never had my complement levels checked and its got me curious. Guess well have to wait and see what happens. I hope you are doing well. Take care and talk to you soon!

P.S. I looked up my rash and it would be considered photodermatitis which is seen in lupus etc and is treated with steroids anyway. Go figure. Have a great one!

*hugs* -Britt
Posted 4/20/2009 8:07 PM (GMT 0)
I thought I would let you know my son had a seizure last night due to a high fever of 106. It was the scariest thing seeing my lil boy have that happen. Im not sure what is scarier having it happen or seeing it happen. I never want to see that again. He has a double ear infection and has to get tubes put in now. Everything is so overwhelming he had a fever yesterday of 102 but wasn't acting sick or showing any other symptoms. I feel bad for not knowing but am praying and want you to please pray for us. I was feeling better with my flare but today have a migraine and some joint pain and am getting a rash from the lights which hadn't happened in a few days. I hope you all are well and you are in my prayers too :) *hugs* -Britt
✚ New Topic ✚ Reply